Lessons from Living, Dying and Living Again

Chapter 3

Distant Thunder 

         By July 2019 my blood draws and periodic visits with the doctors and nurses at Leever had become routine. The blood counts remained stable and so did I. There’d been something of a surprise in February when a letter from Dr. Bowen arrived in the mail. It began with the words “With regret,” which is maybe not the first thing you want to hear from your oncologist, but then it went on to say he’d be retiring in late March after four decades of good service. I soon learned that my new doctor, if I chose to stay with Trinity Health, would be Yueming Chang, who I wouldn’t meet for a while. Helping in the transition between doctors, and much more, was Karen Pollard Murphy APRN, who often saw me when the doctor wasn’t scheduled to do so. The APRN stands for Advanced Practice Registered Nurse, and here we enter the confusing world of APRNs, nurse practitioners and physician assistants. All are important positions in the world of medicine and medical patients, but as to who does what to whom, I just don’t know. I probably never will know, despite some mild googling on my part. What I do know is that it was Karen Pollard Murphy who saw me that July after my blood draw, who sized me up, asked me how I was doing, and ran her practiced fingers along the sides of my neck.

         “How long has this been here?” she asked.

         My neck? How long has my neck been here? She took my index finger and with it traced the lymph node underneath my right ear. It was swollen, no doubt, the first I knew of it.

         That tender moment soon evaporated, however, as I was sent off to yet another St. Mary’s doctor who would conduct a biopsy on the offending gland. After several days, I was called back into his office to learn that my myelofibrosis had now been joined by notorious sidekick leukemia, chronic lymphocytic leukemia (CLL) to be exact, aka the “good kind” of leukemia as some halfwit, no doubt by now deceased, once put it.

         The cancers were now on the march as a team. They still needed some time to organize themselves and determine the paths they would take, but they would work in tandem in order to speed up the assault against me. I really didn’t know what to make of having two cancers at once. It was of course worse than having just one, but how, specifically, would this be so? No one seemed to know. Leukemia was much more common than myelo, and many strategies had been developed to fight its various faces. But having myelo in the mix greatly complicated matters. I met with my new oncologist, Dr. Chang, a native of China with a concerned, empathetic manner I liked. She was well-versed in leukemia but I thought less familiar with myelofibrosis, a word she could not always remember. The strategy, at least for the time being, was to continue as is, paying very close attention to the blood numbers and being on the lookout for signs – fevers, infections, night sweats – that the dam might be ready to break. So as the calendar turned to 2020, the caution lamp had been lit but wait-and-see remained the prescription. And the idea of stem-cell replacement still hadn’t entered the frame.

         It was during this period, however, that I first began thinking of myself as a completely new and different person. Ever since I was a boy, I’d thought of myself as essentially healthy. I’d had a bad case of pneumonia when I was in sixth grade and a few hellacious allergic reactions to poison ivy. I’d had stitches only once, on my head, after falling off a rope swing onto a rock, and never a broken bone. I had laparoscopic surgery on a torn meniscus at age 35, bringing my basketball career to an abrupt end. Still, I remained basically intact. I’d never spent a night in a hospital. Lots of dental work, yes, but they don’t hospitalize you for that.

         But two cancers puts you on the other side of the line. I could no longer pretend not to belong in the waiting room, so I began to engage with the people there. Doomed as we might be, we were buddies, like a bomber crew or a company bound for Normandy on D-Day. We were all packed into the LST under gray skies, headed through rough seas for Omaha Beach and God knows what we’d find there. I began to think more and more of those of my contemporaries who’d already gone overboard. A dear friend who years ago had lost her struggle with pancreatic cancer. A guy in our golf league. A new friend who’d gone as quickly and quietly as a ghost. A local attorney who I’d seen and spoken with in the Leever waiting room. And then there were those I knew who were at various stages of their disease – liver, lung, blood, breast – and differing levels of not feeling well. I’d secretly assess them in a new way when I saw them: “Looks pretty good,” “Having a tough time,” “Dying,” and of course I wondered how they saw me. I got some clues from the doctor’s comments I found on my patient portal. “Looks stated age” was encouraging, as was “normal gait.” “In no acute distress” is always a good way to be. With friends, you looked at them looking at you. Their words were almost always kind and encouraging, but what did you see in their eyes. Was there alarm? Did they have to look away. Not yet, it seemed. Not quite yet.

         Especially tough to witness as I surveyed my side of the cancer line were those among us claiming to be free of the disease after treatment and then, later, and even much later, finding themselves back in harness, grimly watching “House Hunters” on the waiting room TV. Some people, and their doctors, dared to make the “free of cancer” or “remission” claim more than once. The longtime ESPN college basketball analyst Dick Vitale seems like he’s made it four or five times. I usually don’t know what to think when I hear it. I hope they’re right, of course, and never bothered by it again, but that they’re prepared for if and when it comes back. My bottom line was that with two cancers I was well established in that overpopulated field now – certainly not free of cancers but not yet feeling or showing the toll they were taking. I was still moving freely about my life and in and out of the lives of others.

         Marcia and I were in Florida, spending the month of March 2020 in a lovely rental house on Kitching Cove along the St. Lucie River when COVID struck America. We’d driven down a few days after the celebration of my 70th birthday at a local restaurant in Connecticut. Again, family and friends showed up, but the celebratory feeling of the 60th wasn’t quite there. I’d survived those 10 years, fooled everyone, foiled their expectations, so now maybe they weren’t going to be quite so open and forthcoming about how great I was. I didn’t blame them. For one thing, I knew that I wasn’t all that great. And second, once you’d spilled your guts 10 years earlier, what more was there to say or sing? My mother, who’d come up from Washington for the party, got off what I thought was the best line when she announced, rather theatrically, “I don’t mind being 94 but I don’t like the idea of having a child who’s 70.” Still, it was nice to have a reason to get everyone together and especially to get them all back to their homes before the pandemic arrived in force.

         As I recall, it rose, crested and broke on March 13, a Friday. Overnight, it seemed, the country was under attack, the hospitals began to fill up, people started dying and Donald Trump began his fascinating nightly dumbshow full of preening, posing and denial. In Florida, we could pretty much stay to ourselves, go to the beach over on Hutchinson Island or read peacefully by the river. Certainly, in those pre-vaccine days, we didn’t want to catch the disease. I didn’t know how compromised I might be. So when I had to go out to Publix for groceries I wore a mask and gloves, and when I came back home I put my clothes into the washer and jumped into the shower while Marcia washed down all the produce. We scrubbed our hands with extraordinary diligence. We said we completely understood as would-be visitors from up North, including family and my Saratoga golfing buddies, cancelled their plans and stayed put. And when the Florida governor abruptly decided to close the beaches, we decided the time had come for us to go back home, too.

         But there was another reason we couldn’t stay in Florida, a terrible one, one that made my own problems seem like nothing. Our son, Matt, 33, had fallen in love a few years earlier with Dhanushka Gunasekera, six years younger, whom he’d met while they were both out on the town one night in Brooklyn. Their relationship had grown rapidly, they’d traveled together and eventually very happily moved in together to a spanking new high-rise overlooking the Gowanus Canal. In 2018, he’d proposed marriage and they began to plan a big wedding in Newport and maybe even a trip to her homeland of Sri Lanka. But late in 2018, she began experiencing severe, lingering headaches, and before long was diagnosed with cancer of the brain, a glioblastoma, and all plans were off. Instead of the wedding of Dhanushka’s dreams in Rhode Island (they’d booked a waterfront venue), they married at Brooklyn City Hall in June 2019. It was a happy day full of laughter and tears but the cancer was uncaring and relentless and soon became the focus again. Operations, therapies, alternative remedies, prayers, even astrology – nothing did any good. Matt was an exceptional caregiver, devoted, attentive, always there to make her more comfortable or to tease out her lovely smile with a word or two. Once we returned from Florida, we’d drive from Connecticut down to a Manhattan that was eerily emptied out of traffic and people by COVID to visit Dhanushka and Matt and her devastated parents and family – she was an only child – at New York Presbyterian Medical Center on the East Side. She still hoped, hoped to the very end, for a late-stage miracle, but it was clear to all that she was leaving us, which she did at age 28 on June 15, 2020, one day after their first wedding anniversary.

         Dhanushka’s death was a tragedy that defied understanding. Matt came to live with us for a little while because he was reluctant to face alone the enormity of what had just happened. He was welcome to stay as long as he liked. Meanwhile, our family was doing its best to supply him with major events to let him know he was still a part of something. On June 10, he’d become an uncle for the first time when his older brother John and wife Liss gave birth to a baby girl, Penner Amelia Monagan. The wonderful news was somewhat muffled by events, of course, but it was hard not to see the promise, and the future, in Penner’s big bright eyes. John and Liss had met at Ethel Walker School in Simsbury, an all-girls boarding school, where both of them worked as teachers, and John also as the head coach of varsity basketball and softball. They’d gotten married in the campus chapel, with Liss’s father and grandfather, both Congregational ministers, presiding, in June 2017. And now, a most welcome new arrival, a granddaughter, an event that shot through that horrible plague year like a fierce ray of hope.

         Then our youngest, Claire, got into the picture with an event of her own. She and her fiancé, Peter O’Hanlon, had planned on getting married, too, over Memorial Day weekend, in Quechee, Vermont. But those plans were also dashed by COVID, and it was hard to see when all the embargoes would be lifted. We were headed down to Quonnie in Rhode Island for two weeks in July to a cottage with a nice green lawn and blue ocean views beyond. If you really want to get married, I asked, why not get married there? It would be a tiny COVID ceremony with only the two direct families attending (12 in all) and I offered my services as the celebrant. A few years earlier, I’d obtained a position in the ministry of the Universal Life Church so I could legally officiate at a nephew’s wedding in Toronto. And so, with not too much fuss, it was done. It was a beautiful summer day by the sea, we managed to make a surprising amount of noise, and Claire still would have her big party in Vermont with her friends over the coming Labor Day weekend.

         Meanwhile, my myelo, and now my leukemia too, seemed quietly amused that all these other things were getting my attention while they continued to burrow ever deeper into my substrata. By April 2021, my blood numbers began to jump in a way that could no longer be dismissed. The infection-fighting white blood cell count rose to 10.4, at the very upper limit of the normal range, showing that the battle against leukemia had begun. By December, that number had risen to 18.3. As the numbers rose, I was reminded of the best advice I’d ever received as a young would-be writer when a dear college friend of my father, and a lifelong toiler in the writing vineyards, told me, “No one will ever be as interested in what you’re doing as you are.” And so it was with my blood. As 2022 arrived, I was becoming genuinely alarmed, but the medics remained calm. Apparently things still hadn’t gotten serious enough for action.

         I stayed busy writing and also going around like a vacuum-cleaner salesman to Connecticut libraries with a presentation I’d put together that was tied into my book Connecticut Icons, a series of essays that I’d written for Connecticut Magazine. I felt much more tired as I played in my golf league that summer, and, very notably, I lost interest in the post-round drinks that were at least as important a part of the day as the golf was. I joked that I’d reached my lifetime limit on beer but wondered to myself how I could have lost my taste for it, and whether and how it might be a part of everything else that was going on inside me. Another disturbing development was that on nights following golf, while I was sleeping, I began experiencing pretty severe – let’s call them agonizing – leg cramps, mostly in the calfs and ankles. It never happened while I was playing, only after a six-hour delay, in the middle of the night. By morning, all signs of discomfort had disappeared and there were no lingering effects. I felt like I was gradually breaking down, kind of like my golf game itself.

         Then, with my August 2022 blood draw, I finally got what I considered to be the full attention of the authorities. The results showed my white blood at a whopping 39.3 (again, high normal is about 10), red blood below 3 and hemoglobin below 9. The civilized thrusting and parrying with my cancers had abruptly turned murderous. The false war was over. The days of rage had finally arrived. Someone rang the chemo bell.

Lessons from Living, Dying and Living Again

Chapter 2

My Memorial Service

            It’s hard to know what doctors hate more, Google, where patients and patients’ families and friends can turn for thousands of poor, incomplete, misleading, wrong-headed or possibly even accurate takes on important medical subjects, or patient portals, where test results and other data are posted with remarkable speed and are thus open to misinterpretation before any professional input can be considered. The correct answer is probably Google, where I was quick to turn once I felt my diagnosis had been well and truly confirmed (there were no such things as patient portals back in 2009 anyway).

            What I found under “myelofibrosis” then and in the years since has been riveting, even the many parts I haven’t understood. The pages on “Causes,” for example, I thought would be about things like smoking and working in asbestos factories. Instead, they talked about “an acquired mutation of JAK2, CALR or MPL in a hematopoietic stem/progenitor cell in the bone marrow.” I kept reading because they were talking about what was going on inside of me, but, honestly, how deep into the capital letters was I expected to go? There was a reason I didn’t apply to medical school, even with doctors in my family background. And if you told me that the names of some of the chemotherapy drugs – Ojjaara, Inrebic, Vonjo – were international soccer stars, I would have believed you. Occasionally an interesting, more relatable tidbit turned up. Exposure to benzene, for example, is widely cited as increasing the risk of developing myelo. Benzene is described as a colorless, flammable liquid with a sweet odor. It is naturally produced by volcanoes and forest fires, found in emissions from burning coal and oil, gas stations and car exhaust. It can also be found in detergents, drugs, dyes and pesticides. I went down the list. Volcanoes? Certainly not. Forest fires? No. Burning coal? No. In fact, I couldn’t claim more than normal exposure to any of the benzene carriers. As anyone would, I wanted to blame my myelo on something specific, like the pack of Larks I smoked back in 1974. But most of the time, apparently, according to all that’s known today, it just happens.

            Sometimes a Google search yields a tremendous trove, however. It’s where I found something called “Overview of MPNs: History, Pathogenesis, Diagnostic Criteria and Complications,” the author of which is my own Dr. Ronald Hoffman at Mount Sinai and two of his colleagues. It’s a very detailed, meticulous summary of what was known at that point about myelofibrosis and other MPNs (myeloproliferative neoplasms), with the promise of more detailed papers by other experts to come. I didn’t read every word, of course, not even close, but I did learn some things:

            1. Myelofibrosis was first reported in 1879 by German surgeon Gustav Heuck, who’d identified two of his patients with massive splenomegaly, leukoerythroblastosis and bone marrow fibrosis. Eponyms for the disease are Heuck-Assmann Disease or Assmann’s Disease, for Herbert Assmann, who published a description under the term “osteosclerosis” in 1907. It wasn’t until 1951 that Dr. William Dameshek connected the three conditions which he termed myeloproliferative disorders – polycythemia vera, essential thrombocythemia and primary myelofibrosis. He found them to be biologically related but otherwise distinct.

            2. Myelofibrosis is a rare disease, affecting 0.3 in every 100,000 persons, meaning one person in New Orleans might have it. It tends to attack older folks, the median age being 60, but those younger, even including children, can get it, too. It’s more common in males.

            3. There is something in our bodies called the “splanchnic bed,” which I’d never heard of before. It really has nothing specifically to do with myelo, but I just wanted to let you know about its fantastic name.

            4. There are lots of different leukemias, which can be fellow travelers with myelo. The one that late-stage myelo can morph into, with nearly always fatal consequences, is acute myeloid leukemia (AML). Much, much effort is made to avoid AML at any and all costs. My doctors and I would end up going to great lengths to avoid it, too.

            5. The dawn of hematology occurred in the mid-1650s when a Dutch biologist, using a new device called a microscope, detected the red blood cells of a frog.

            6. The survival rates of the myeloproliferative disorders go like this: essential thrombocythemia – 20 years is the median from time of detection; polycythemia vera – 14.1 years; “overt” myelofibrosis – 3.1 to 5.8 years.

            Seeing such grim numbers may explain why I, for the most part, eventually decided to stay away from Google and the internet. There are those among us who haunt the online myelo pages in search of the latest news from the research front, reports from experts in the field and stories from fellow patients. I didn’t want to do that. I felt that the “latest news,” if it was actually a breakthrough of real merit, would come find me. And my interest in the stories of others, and the keep-your-chin-up dispatches from the myelo support groups, was minimal. In fact, after an initial flurry, my interest in my disease itself eased off as the months and then years went by and my condition remained stable. To some degree, absurdly, I felt that if I didn’t think about it, it wasn’t there. Or maybe, like a loudly humming refrigerator, it would somehow fix itself. Even so, things would occasionally intrude to remind me of the truth: a clock somewhere out there was ticking.

            The first of these came on March 8, 2010, my 60th birthday. Normally, a “0” birthday calls for a celebration beyond the norm, maybe even a big party. Mine, however, was like the classic memorial service for someone who’s still alive. Marcia had set things up, a catered evening affair at a local country club, and invited dozens of family and friends. Everyone knew about my recent bad news, and so the undercurrent in the room was hard to miss: “We’re losing Charley. Let’s not spoil things by saying anything overt, but let’s give him a good send-off!” Consequently, the tributes flowed freely. My early years were recalled with affection, songs were sung, my children, even middle child Matt, beaming in from South Korea, recalled their own early years and my loving and occasionally (to them) hilarious place in the middle of it all. As for me, I started out strong but eventually was reduced to tears. I couldn’t be coolly philosophical about it. I thought I was dying, too, and all of this being put before me, these many faces that I loved so much, were exactly what I wanted to hold onto. It was proof that I wasn’t ready to leave. Not at 60. There were too many more stories to be told, songs to be sung and toasts to be drunk. 

            Sometimes the reminder of my own condition came more starkly and unexpectedly. One morning in June 2010 I chanced to read in my local newspaper that a man named Jonathan Wolken, age 60, had died at Mount Sinai Hospital in New York, with the cause reported as myelofibrosis and complications from a stem-cell transplant. Wolken had been a year ahead of me at Dartmouth and, with a couple of college mates, had started the remarkably innovative dance troupe Pilobolus, based not far from us in Washington, Connecticut. We’d seen them perform several times. I’d felt a special affection for them because of our college connection, but I loved and admired their spellbinding takes on dance and movement, too. Now I was startled to see that one of the founders had died of something I also had. Same age, same college, same disease, same hospital – it was like he was the unlucky version of me, or I was the lucky version of him. I probably didn’t even really take in the news story’s reference to stem-cell replacement. I still was unaware of it as something that might be for me. It was seeing the word “myelofibrosis” on the printed page that made me sit up straight. You just never saw it in black and white like that, as if it were a weapon found at a murder scene. I tried to bravely spoon up my Wheaties that morning, but in truth I’d once again felt the hard summoning tap on my shoulder.

            I couldn’t afford to dwell on it, though. I had too much to do. I’d soon finish up my 24-year tenure as Editor of Connecticut Magazine and begin some types of writing I’d never tried before. The magazine had been a wonderful, sustaining job for a long time. We got many good things done there, even winning some national journalism awards, but its purchase by the now defunct Journal Register Company and its arrogant, inept and personally offensive leadership marked the beginning of a protracted decline. In retrospect, I shouldn’t have stayed as long as I did, but I guess I felt an attachment to the staff and loyalty to the magazine itself. I may have been worried about my medical insurance coverage, too, although Marcia’s benefits at her work were far more generous. Anyway, I hung around until they started the salary-dumping phase of their hideous regime, just before they sold the magazine off to a rapacious hedge fund. They came for my head, and salary, in mid-2013. We said our sad goodbyes and I lit out for my desk at home. I found some good freelance work and started on my boy’s dream of writing fiction.

            Maybe my myelo was pushing me to try new things before it was too late, or maybe it was my recent birthday, but the decade of my sixties proved fruitful. First came writing the book and lyrics for a musical, “Mad Bomber,” and seeing it staged in 2011 at Seven Angels, our regional theater in Waterbury. It was based on the story of local guy George Metesky, who in the 1940s and ‘50s set off a string of pipe bombs in Manhattan and became known in the city tabloids as the Mad Bomber. I had no background in the stage so I don’t know what made me want it to be a musical, but I did and that’s what it became. We never did quite figure out a good final number for the show, but it was exciting for me to sit up in the top row of the theater and listen to my words and rhymes coming out of the actors’ mouths.

            Three novels came next in the busy decade. The first was “Carrie Welton,” published in 2014, a historical fiction based on another actual Waterbury figure, this one from the mid-19th century, a young woman who was in some ways ahead of her time but prone to personal mishaps and misadventures. It was fun for me to research Waterbury, New York, Saratoga Springs and Boston as her story took her from place to place, and I loved going along for the ride, giving her and her contemporaries simple, smart and outrageous things to do and say. The second novel, 2018, was a mystery/thriller “The Easter Confession,” a Waterbury story set in 1955 involving art theft, murder and a Catholic priest who, tossed by circumstances, must solve it all basically by himself. The third novel, “The Darlings,” also written during this period, is still looking for a publisher, but no publisher seems to be looking for it.        

            Anyway, not bad production from an anemic cancer patient. Also not nothing were our Sunday group hikes of three to five miles through the Connecticut woods, or my participation in a weekly golf league, or spending a part or all of March in Florida and all or part of July on the Rhode Island shore in the little beach community of Quonochontaug, commonly called Quonnie, where Marcia had gone in summer for her entire life and where we, as a family, felt happiest and most at ease.

            During this period, people very rarely asked me how I was feeling. Maybe I looked healthy enough. Maybe they were afraid I’d give them an answer they didn’t want to hear. I continued to regularly visit Leever for blood draws and an occasional consult. I became very familiar with the blood routine. Everyone seemed most concerned with my white blood cells, hemoglobin, platelets and red blood cells. My first counts, taken for my initial visit with Dr. Bowen in January 2010, were 6.7 for white blood (in the normal range), 11.6 for hemoglobin (a little below the 12.0-18.0 norm), 3.82 for red blood (4.20-6.10) and 534 platelets (higher than the 150-400 norm). I would have blood drawn literally hundreds of times over the next 14 years and each of these blood components would demand its troubling, dangerous time in the spotlight. For that first decade, though, the numbers stayed generally the same: normal range for white cells and platelets, low red cells and hemoglobin (thus my persistent anemia).

            But a peace this weak and wobbly couldn’t last. Too many things conspired against it. Everyone knew, right from the start, that the bad days would eventually arrive. As it turned out, 2019 would be the year they’d begin, slowly at first but then, like an old steam engine leaving the station, picking up speed.

It’s kind of a dream come true to grow up in Waterbury, going to movies and concerts at the legendary Palace Theater, and then one day have your own name and image on the marquee (with a “Sold Out” addendum no less!). But that’s where I was 4/1/25 for a presentation based on my “illness memoir” called “First They Kill You,” based on my recent nearly overwhelming medical setbacks and the subsequent miracle of stem-cell replacement. If you’re interested in reading the first chapter (trust me, it’s entertaining), it’s posted below, with more to follow. I’d love to find a publisher for it, but this will have to do for now.